{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,10]],"date-time":"2026-03-10T00:40:07Z","timestamp":1773103207510,"version":"3.50.1"},"reference-count":40,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2023,1,3]],"date-time":"2023-01-03T00:00:00Z","timestamp":1672704000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100000054","name":"National Cancer Institute","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000054","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Psycho-Oncology"],"published-print":{"date-parts":[[2023,3]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Objectives<\/jats:title><jats:p>Adolescents and young adult (AYA) cancer survivors face unique medical and psychosocial sequalae, including chronic health conditions, late effects of treatment and fear of recurrence. The meaning of cancer survivorship may be further complicated for AYAs with hereditary cancer predisposition syndromes. This study used a patient\u2010centered framework to investigate how AYAs with Li\u2010Fraumeni syndrome (LFS) consider cancer survivorship.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>An interprofessional team conducted 30 semi\u2010structured interviews with AYAs (aged 18\u201341, mean 31\u00a0years) enrolled in the National Cancer Institute's LFS Study (NCT01443468). Twenty had experienced at least one cancer diagnosis. Interview data were thematically analyzed by an inter\u2010professional team using interpretive description and grounded theory methods.<\/jats:p><\/jats:sec><jats:sec><jats:title>Findings<\/jats:title><jats:p>Participants viewed \u201csurvivorship\u201d as a period marked by no evidence of formerly diagnosed disease. By contrast, participants felt the label \u201csurvivor\u201d was tenuous since LFS is characterized by multiple primary malignancies and uncertainty about intervals between one diagnosis and the next. Many AYAs viewed survivorship as requiring a high degree of suffering. Though many personally rejected \u201csurvivor\u201d identities, almost all articulated its various functions including positive, negative, and more complicated connotations. Instead, they chose language to represent a range of beliefs about survival, longevity, prognosis, and activism.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>AYAs with LFS struggle with the term \u201csurvivor\u201d due to their multi\u2010organ cancer risk, short intervals between malignancies, and evolving identities. Loved ones' cancer\u2010related suffering informed perspectives on survivorship. Survivorship care for AYAs with cancer risk syndromes requires interprofessional interventions that address their unique biomedical and psychosocial needs.<\/jats:p><\/jats:sec>","DOI":"10.1002\/pon.6080","type":"journal-article","created":{"date-parts":[[2022,12,14]],"date-time":"2022-12-14T04:53:55Z","timestamp":1670993635000},"page":"375-382","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":9,"title":["How do young people with a hereditary cancer predisposition syndrome understand and experience cancer survivorship? \u201c<i>With Li\u2010Fraumeni syndrome, it\u2019s just an intermission<\/i>\u201d"],"prefix":"10.1002","volume":"32","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-3133-820X","authenticated-orcid":false,"given":"Allison","family":"Werner\u2010Lin","sequence":"first","affiliation":[{"name":"School of Social Policy and Practice University of Pennsylvania  Philadelphia Pennsylvania USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rowan","family":"Forbes Shepherd","sequence":"additional","affiliation":[{"name":"Clinical Genetics Branch Division of Cancer Epidemiology and Genetics National Cancer Institute  Rockville Maryland USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Camella J.","family":"Rising","sequence":"additional","affiliation":[{"name":"Clinical Genetics Branch Division of Cancer Epidemiology and Genetics National Cancer Institute  Rockville Maryland USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1663-0317","authenticated-orcid":false,"given":"Ashley S.","family":"Thompson","sequence":"additional","affiliation":[{"name":"Clinical Genetics Branch Division of Cancer Epidemiology and Genetics National Cancer Institute  Rockville Maryland USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Chloe","family":"Huelsnitz","sequence":"additional","affiliation":[{"name":"Behavioral Research Program Division of Cancer Control and Population Sciences National Cancer Institute National Institutes of Health  Rockville Maryland USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Catherine","family":"Wilsnack","sequence":"additional","affiliation":[{"name":"Steve Hicks School of Social Work University of Texas at Austin  Austin Texas USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9950-2745","authenticated-orcid":false,"given":"Patrick","family":"Boyd","sequence":"additional","affiliation":[{"name":"Behavioral Research Program Division of Cancer Control and Population Sciences National Cancer Institute National Institutes of Health  Rockville Maryland USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alix G.","family":"Sleight","sequence":"additional","affiliation":[{"name":"Clinical Genetics Branch Division of Cancer Epidemiology and Genetics National Cancer Institute  Rockville Maryland USA"},{"name":"Department of Physical Medicine and Rehabilitation Cedars\u2010Sinai Medical Center  Los Angeles California USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sadie","family":"Hutson","sequence":"additional","affiliation":[{"name":"Department of Nursing University of Tennessee  Knoxville Tennessee USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Payal P.","family":"Khincha","sequence":"additional","affiliation":[{"name":"Clinical Genetics Branch Division of Cancer Epidemiology and Genetics National Cancer Institute  Rockville Maryland USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2023,1,3]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.27668"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00520\u2010016\u20103396\u20107"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.3389\/fonc.2013.00075"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1002\/pon.5577"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1002\/cncr.29869"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.critrevonc.2021.103291"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1002\/pon.4490"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1007\/s13187\u2010016\u20100997\u20102"},{"key":"e_1_2_9_10_1","unstructured":"National Cancer Institute.Dictionary of Cancer Terms. 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